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Endometriosis Blog: The Value Of A **REAL** DAY OFF!!

Endometriosis blog entry for 7/31/08:

Yesterday I didn't "practice what I preached". I meant to rest but instead I didn't. What I saved in blog-writing time, I made up for in blog-related emails and long replies to yesterday's comments.

Therefore, I am going to take a true day off from blogging today: no posting entries, no replying to comments, no networking with fellow bloggers, no installing tools on the blog, no checking blog traffic.

This will be the first 100% ***REAL*** DAY OFF since I began blogging on June 1, 2008!

After that we have relatives coming into town and I will be pretty busy. So if you post any comments and don't get an immediate response, you'll know why. I'll do my best to catch up on answering comments when I return but they will remain in moderation until I resume blogging.

So we'll call this my "out of office" message for at least a day.

I hope you'll keep those comments coming in while I'm away and that you'll stay with me/check back soon on my endometriosis & chronic illness blog!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: Importance Of Listening To Your Body!!

I would love nothing more than to write a detailed, inspiring, thought-provoking article today. My body says no. So this brief post will have to do for today but I hope it sparks a conversation with endo blog readers!

I have learned the importance of listening to my body. I think this is an important lesson for anyone who is chronically ill.

Years ago, I would feel guilty when I had to slow down and rest. I don't feel that so much anymore. I have accepted the fact that I have numerous chronic illnesses and I do the best I can to manage them and be productive... but there will be days when I just have trouble functioning at a basic level.

So this quick post is about the importance of listening to your body. I have learned some hard lessons about the consequences of not listening to my body. Now I know that when my body says, "slow down and rest"... I need to listen.

So I'm going to go do that but I would be thrilled if this post can spark a conversation with others out there who know what I'm talking about. I know there are others out there because about 90% of my local endo support group members have shared with me that they have these days too.

Please share your comments on the topics of listening to your body, physical exhaustion, emotional exhaustion, chronic pain/illness, co-existing conditions, and feeling drained. I know there are readers out there who know what I'm talking about and I'd love to hear from you!

That's going to have to do it for me for now. I'm just too tired to type!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: Dr. Randy Pausch Feature TONIGHT on ABC TV

According to Mckay k, an endo blog reader, there will be an ABC news special on tonight about Dr. Randy Pausch!

I highly recommend tuning in. I also recommend having a box of tissues handy. (I went through plenty during Diane Sawyer's interview with Dr. Pausch several months ago).

See Diane Sawyer talking about Dr. Randy Pausch here:


I checked the ABC website and it appears this show will air at 10:00 pm tonight. Check your local listings to be sure.

This is a follow-up to the following post: "Sunday, July 27, 2008 A Tribute to Dr. Randy Pausch (The Last Lecture)".

If you get a chance to watch this program tonight, I guarantee it will be worth your time!

Thank you, Mckay k, for making me aware of tonight's special on ABC.


Here is Randy Pausch's website for more information about pancreatic cancer and his inspirational battle with it. It includes more video clips, including his absolutely riveting testimony before Congress:


He really made an impact on so many people!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: What Is "Self-Help"?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

I joined my first endometriosis support group in 1992 at the age of 23. I have been involved with endo support groups ever since.

When I formed a local endometriosis support group in 2001 (in another city from where I was first a group member), I took a class that another support group leader had highly recommended. It was excellent!

The class was on the topic: "facilitating self-help groups" and was taught by a trainer at my local branch of the Mental Health Association (see the National Mental Health Association website below):


I found the class VERY helpful and it enabled me to learn some basic principles that I could apply when facilitating an endometriosis support group. About 20 people took this class alongside me; their reasons for taking the class were many and varied. Some people were taking the class as a requirement for their jobs. Others, like me, took the class because they wanted to become better informed before volunteering their time as a support group leader or meeting facilitator.

Today I did some searching on the Internet on the topic of "self-help" and I came across an interesting site:


I did not have time to review the website in its entirety but the sections I skimmed through were thought-provoking and interesting to me.

What do you think...?

+ What is the value of self-help?
+ What is the difference between a self-help group and a support group, if any?
+ What is the significance of "giving back"?
+ How can it HELP your health to volunteer??


That's right! Volunteering your time can give YOU health benefits!!

There is research to support this...

See the following website:


Perhaps you don't have a local endometriosis support group. Maybe you'd like to start one to help others in your area AND to help yourself? Networking with fellow patients is VERY HELPFUL! I have learned this from personal experience.

Here is an interesting quote I found at the "Get Involved!" link above:

“People who do volunteer work are much less likely to suffer illness. The close interpersonal relationships and community involvement that occur with volunteer service are tailor-made to enhance the healing process.”

—The Healing Power of Service by Edward V. Brown

I am not familiar with Edward V. Brown but I think his quote above is very true... based on my own personal experience. Support groups are certainly no cure for endometriosis and other chronic illnesses. However the power & value of networking with fellow patients cannot be emphasized enough!

What do you think? How do you benefit from the support of fellow endometriosis patients?

Have you ever stopped to think that "giving back" or volunteering could possibly give YOU health benefits?????

Please check out the sites above and see what you think!

Who knows? Maybe someone reading this will get inspired to volunteer time to a local endometriosis support group OR maybe even start an endometriosis support group if there isn't one available locally?

Let me know what you think about the idea that volunteering can enhance you immune system and lower your blood pressure, as was mentioned on the "Get Involved!" site above. It's amazing, isn't it??

The above site also says, "Volunteering helps to rebuild communities and solve serious social problems. And, according to research, it can also improve your physical and mental health!"

By helping each other, we can truly help ourselves and facilitate healing. It's a win-win for all involved.

I'd love to hear everyone's feedback on this one... :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


A Tribute to Dr. Randy Pausch (The Last Lecture)

On July 25, 2008, a very special man named Dr. Randy Pausch passed on.

His legacy will remain in the hearts and minds of the millions of people he touched around the world.

You may have seen Randy Pausch on Oprah or watched his interview with Diane Sawyer.

Or you may not have had the pleasure of hearing this inspirational man speak about life, living, and dying with dignity and grace.

For those who have not had the privilege of seeing "The Last Lecture", I'm going to include the video of it here. It was posted on YouTube after he made his last lecture at Carnegie Mellon University (where he was a professor) and it since then became well-known around the world.

First there is a brief video clip tribute to Dr. Pausch. Then Dr. Pausch's the "Last Lecture video" is about an hour and 16 minutes.

I assure you that if can set aside the time to watch his lecture it will be well worth your time!

First, here is the tribute video that was posted on YouTube after his death by "khoof7". It was posted on YouTube on July 25, 2008 (running time 1 minute and 20 seconds):

The full video of "The Last Lecture" captured the attention of people around the world. I hope you'll find it as inspirational as I did... and as millions of others around the world have as well.

Here is the description listed on YouTube of the "Last Lecture" video (posted by "carnegiemellonu":

Carnegie Mellon Professor Randy Pausch (Oct. 23, 1960 - July 25, 2008) gave his last lecture at the university Sept. 18, 2007, before a packed McConomy Auditorium. In his moving presentation, "Really Achieving Your Childhood Dreams," Pausch talked about his lessons learned and gave advice to students on how to achieve their own career and personal goals. For more, visit www.cmu.edu/randyslecture.

Here is the video of "The Last Lecture". Its running time is 1 hour and 16 minutes and it is worth making time to watch it! It may well change the way you look at your life!!

Clearly, Randy Pausch's story touched many lives and inspired millions of people to live with purpose, to make a positive difference in others' lives, and to have fun while doing it. The legacy he leaves behind for his family is tremendous.

He painstakingly videotaped large amounts of pictures so that his young children will be able to see the videos as they get older and can better understand his life and his death.

Randy's wife was interviewed by Diane Sawyer as well. Jai Pausch's grace and eloquence in the face of such a tragic diagnosis/prognosis was awe-inspiring. Clearly Randy and his wife were soul mates.

He obviously did everything he could to prepare his family for what would happen after he passed on, as anyone who saw the moving interview with Diane Sawyer can attest to.

His bravery, positive attitude in the face of terminal illness, and determination to leave a meaningful legacy for his family (and for the world) will live on.

Randy Pausch made a meaningful, hopeful, positive impact on the world.

Here is the link for the Diane Sawyer interview with Randy Pausch:


The same link as above will take you to video of Randy Pausch delivering the commencement address to the Class of 2008 at Carnegie Mellon University before his death.

If you are interested in learning more about Randy Pausch, his book "The Last Lecture" is located in my virtual bookcase in the right sidebar. Just look for the My Shelfari bookcase and click on "The Last Lecture".


Here is Randy Pausch's website for more information about pancreatic cancer and his inspirational battle with it. It includes more video clips, including his absolutely riveting testimony before Congress:


He really made an impact on so many people!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Blog: The Importance of Relaxation To Your Health...

I have found a cool relaxation blog I'd like to share with readers here...

There is so much information available on the Internet that I have been having some trouble focusing and deciding how to spend my time reading the many blogs available that will inform me and help me to write a better blog myself.

There is a blog I have been following that I'd like to highlight today. It is written by Konstantin Koss of Germany.

It's called "Real Relaxation" and is described as a "Portal on Stress Management, Wellness, Massage and whatnot".

Here is the link to the main site:


Also, I'd like to highlight a section on stress management that I found particularly helpful:


Stress management and relaxation are SO important when dealing with chronic illnesses like endometriosis (and fibromyalgia and interstitial cystitis... and the list goes on...)!!!

I have found this site especially helpful and have added it to my favorites (see bottom of my homepage). I hope you find it as helpful as I do!

I really think as an endometriosis patient that you will appreciate the tips this blog has to offer.

There's even a funny video clip in the stress management link. :)

So relax and go check it out! :)


P.S. After you check this relaxation blog out, please post comments here and let me know what you think!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

You may or may not have noticed the poll that has been in the right sidebar for awhile now entitled: "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)."

Well, obviously some of you have seen it because you took the opportunity to cast your votes! Thank you to those who did vote! The more feedback I get from endo blog readers, the better I can tailor the blog to meet your needs.


"What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer).":

Chronic Pain and/or Illness:

Infertility and/or Miscarriage:

Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...):

Endo's Impact on Relationships:

Stress and/or Anxiety:

How Support Groups/Networking with Fellow Patients Can Help:

Integrative/Alternative/Complementary Medicine:

All of the Above:


While this poll is obviously not a scientific one, I think the high percentage of readers interested in Integrative/Alternative/Complementary Medicine is significant!

So, I will continue to focus in this area especially in the future. I've also made note of the interest in the other topics mentioned in the poll!

There are many things I take into consideration when deciding what to post here on the endo blog...

For example, I pay close attention to which posts get the most feedback with posted comments. I will also take into account the results of this poll. Also, I review statistics on which parts of the blog get the most clicks. The traffic monitors sometimes give me clues on how to proceed as well. All of these bits and pieces of feedback really help me to customize the blog to meet your needs!!

I really want to emphasize that your feedback on polls like this truly helps me decide what to write in the future.

So will your posted comments on this blog!!!!!

Some days I may just post what I'm in the mood to post but I always try to keep in mind what information has been meaningful to me AND to my local endometriosis support group members. This really helps me to figure out which topics may also be of interest to you!!

While feedback on posts I've already made IS VERY HELPFUL, it doesn't tell me what I may be MISSING or SPENDING TOO LITTLE TIME ON. I'm afraid I don't read minds. :) :)

Soooooo, if there is an endometriosis-related topic you'd like to focus more attention on, please let me know. Perhaps there is something we've touched on that you'd like to discuss in more depth. Maybe there is an endometriosis-related topic that you would like to suggest that we haven't talked about? The more feedback I get from blog readers the better!

I am looking forward to continuing to receive more feedback like your comments and poll results in the future. It really WILL help to shape the direction of this blog if I know what your needs are and how this blog can best serve them.

We have already spent a good deal of time discussing the "Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...)" category on this blog.

I DEFINITELY plan to continue to focus quite a bit on these topics as they scored highest from the readers who took the poll on what topics are most interesting or informative.

So please keep that feedback coming! It really helps guide me as I'm deciding what topics to include and how much time to devote to each.

By the way, now that the results of the poll are posted here I plan to remove it from the sidebar shortly and replace it with something fresh.

Thank you! :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Patients: "The Perfect Menopause": Book By Dr. Henry M. Hess, M.D., Ph.D.

While I don't normally plug I book until after I've read it, I'm making an exception is this case for a highly recommended book!!

I'm writing to tell you about an exciting book I just discovered. I've only read part of it but it's VERY interesting and it was written by Dr. Henry M. Hess, M.D., Ph.D.

Some of my local endometriosis support group members have gone through surgical menopause... in other words menopause brought on by a hysterectomy. Others have gone through natural menopause. Still others are entering the perimenopause years. I think it's important to pay some attention to the topic of menopause (and perimenopause).

Many women I know personally were led to believe by their doctors that a hysterectomy would "cure" their endo... only to have serious health problems post-hysterectomy that are endometriosis related. THERE IS NO CURE FOR ENDOMETRIOSIS!

Dr. Henry M. Hess is a gynecologist, chemist, natural therapist & menopause expert. Dr. Hess has practiced in all areas of obstetrics and gynecology for over 25 years with a special interest in menopause and perimenopause. He believes in the integrative approach - a blend of traditional and natural medicine, and this is the focus of his book:

The Perfect Menopause: 7 Steps to the Best Time of Your Life by Dr. Henry M. Hess, M.D., Ph.D., (with Tiffany Farrell).

You may have seen the numerous stories in the news about estrogen replacement therapy or hormone replacement therapy and changes in how the medical community views the benefits vs. risks of certain medications. Due to recent controversy (sometimes quite heated) over treatment for the symptoms of menopause, I'm going to include the disclaimer straight from the book, The Perfect Menopause, here:

This book is meant to educate all women on the latest options for management of their menopause. However, it should not be used as an alternative to appropriate medical care. The information given here is designed to help you make informed decisions in the context of your specific medical situation with the help of your qualified medical provider.

In light of ongoing research and the constant flow of information, newer medical discoveries may invalidate some of the data presented here, and could even alter the considerations discussed in this book. We hope to continue to present updated versions of this book, recognizing that "the answers will continue to change".

In view of the possibility of human error and changes in medical sciences, neither the authors, nor any individual involved in the preparation of this work for publication, nor the University of Rochester, nor any individuals or other institutions mentioned in this book warrant that the information is in every respect accurate or complete. Neither the authors, nor the University of Rochester, nor any other party or institutions mentioned in this book are responsible for any errors or omissions, or for the results obtained from the use of the information in this book. We strongly advise that the information in this book be used in collaboration with your qualified medical provider.

The book points out, "The fact that it is only within the last century or so that life expectancies increased enough for menopause to become a regular experience for women indicates that the field of menopause is a relatively new area of medical research. Before the 1900s, the average life expectancy for women was 47".

If you are in need of information on menopause or perimenopause, this book was reviewed by Tara Allmen, M.D. (Columbia University College of Physicians & Surgeons, Center for Menopause, http://center-for-menopause.com/) as follows, "Finally, women have a scientifically accurate and up-to-date resource on menopause!"

Here is the website associated with this book:


With all of the confusion about treatments for menopause in the media these days and the fact that some of the women in my local endometriosis support group struggle with how to handle such symptoms, I thought it would be a good idea to devote a post to this book on menopause. Hopefully some of you reading this blog will find it helpful!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

This morning's post at 11:01 AM read as follows ---

Hope to post more later. On way to GYN...

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.



This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"

What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!

This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!

Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!

At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.

Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!

The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.

Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!


If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!

So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.

The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).

I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:

+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.

+++ interstitial cystitis

+++ pelvic congestion syndrome

+++ irritable bowel syndrome

+++ ... and, of course, endo!

Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.

Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...

I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.

Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.

I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).

Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.

Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.

They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!

Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!

I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!

So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.

Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.

Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!

Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!

In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).

Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!

Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!

Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!

Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).

I'm glad the appt is over!

P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!


Endometriosis Blogger Honors BlogHer '08 (San Francisco)!

Well, the BlogHer '08 Conference in San Francisco, California concluded yesterday.

I read about this conference for months before I even became a blogger on June 1, 2008. The anticipation had really been building for many people regarding this conference.

Since becoming a blogger, it seems to be something I heard or read about on a daily basis. So many of the blogs I've come across as I've started up my own blog were written by women who were going to the BlogHer '08 conference in San Francisco.

Last week I wrote two Guest Blog articles for Tracee Sioux of www.sosiouxme.com while she was on her trip to the BlogHer conference.

When reading Pamela Jeanne's infertility blog Coming2Terms, I learned she was also attending BlogHer.

There has been a lot of buzz about this exciting conference on many blogs I've seen in recent months.

I would be lying to you if I said I didn't envy those who has the opportunity to attend the BlogHer '08 Conference in San Francisco.

There are a multitude of reasons my secret desire to attend this conference made no sense but it didn't make want stop wishing I were going to it:

(1) I have only been blogging since June 1, 2008 and it would have been premature for me to go.

(2) With my illnesses and level of disability, a trip for a conference in San Francisco, CA would be impossible for my body to handle.

(3) I wouldn't have been able to afford it.

(4) Most likely it has been booked for many months... before I even had heard much about it.

By using twitter and email, I have had some communication with Tracee Sioux during her trip.

I also twittered back and forth with Pamela Jeanne (Coming2Terms) during the conference.

Also, I was invited on twitter to be a contact person for a woman named Kristen King (who was at BlogHer); I later read Kristen's twitter update that she had met Tracee at the conference.

I read transcripts that someone transcribed live (and they did an amazing job capturing the comments and giving readers the idea of what it might be like to be there) and received twitter updates from several people regarding which workshop they were in, how awesome it was, what type of topics were covered, etc.

So I guess you could say that I stayed close to my computer this weekend and lived somewhat vicariously through those who has the privilege to attend this conference.

I have always wanted to go to San Francisco. It's one of those cities that looks so pretty in the movies: the hilly, winding streets and the trolleys... It just looks like a fun place to check out. So I am happy for those who did attend! By all accounts I heard the conference was a big success.

I have installed a cute BlogHer '08 "widget/tool" in my right sidebar right under my bio. Check it out!! There are links to sooooooo many blogs on it!! Just click on what looks interesting to you and the blog will pop up.

Since the widget gave an option to 'add yourself', I did just that. If you sort by first name under "jeanne", you'll get to my blog. These widgets are out there everywhere. I found that out yesterday when I got slammed with email after I had added myself on the widget. I encourage you to check out other bloggers on the widget.

For more info about BlogHer conferences see this link:

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Have a great day! :)


Endometriosis Exhaustion: I'm Getting SLAMMED With Endo Blog Emails (& I Am NOT Complaining)!!! Please Be Keep Being Patient W/My Response Rate. :)

Dear wonderful, patient endo blog readers,

I eventually started to count my incoming emails today because there were so many (and from many countries too)! I whipped through answering so many, so fast that I didn't count them all but it absolutely had to be nearly 200 incoming emails easily!

Clearly, there is only one of me and lots of you. So please continue to be as wonderfully patient as you've been.

PLEASE keep those comments coming!

My intention is NOT to discourage comment-posting!!!

I just wanted you to know it may take a bit for me to respond in the next couple of days at the rate things are going.

PLEASE DO keep the comments coming fast & furious --- and I will keep doing my best to respond as quickly as possible. It's MUCH faster for me to address posted comments on the blog rather than direct emails.

So, unless you have something private to discuss offline... please post it and I'll post a response right on the blog ASAP. Sound good to you?

Thanks again for your patience. I'm whittling down those emails. I just counted 67 unopened from today that I haven't touched yet so I'd better get back to email for now!

My planned post for today about the BlogHer '08 Conference (a note which is still sitting unfinished in my drafts!)... should be published soon. I'm hoping for tomorrow.

In the meantime, have FUN playing with the BlogHer widget --- it's located right under my bio in the sidebar. It gives you access to many, many cool blogs!!!

Just click on any that look good to you & the blog will pop up! (I added my blog in there even though I wasn't in San Francisco for BlogHer this weekend. I believe this is part of why I got slammed w/emails today. I am NOT complaining!)

Search for me by name and you'll find me in the widget! (I was in San Fran in spirit today)! :)

Take care,


This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

New Endometriosis Blog By "Alex" --- A/K/A: "The Harry Potter Blogger"!

If you haven't yet read yesterday's post and are working your way backwards, you may want to refer to it to avoid some confusion...

In yesterday's blog post, I wrote about a couple of blogs. One of them was actually a Harry Potter blog but it was written by an endometriosis patient named Alex.

Now this gets a little confusing because Alex (the Harry Potter blogger from yesterday's post: "Saturday, July 19, 2008 Endometriosis Blog: HOPE Really Matters For Healing, Coping, & Managing Chronic Illness!") is not to be confused with...

ALEXANDRA CARMICHAEL (from the "Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!" post).

So ALEXANDRA CARMICHAEL is the medical researcher who Co-Founded CureTogether (www.CureTogether.com), an organization which is doing research on migraines, endometriosis, and vulvodynia. CureTogether launched their organization on July 15TH.

Alex is the "Harry Potter blogger" I mentioned in yesterday's blog.

Here is where it could get a little confusing... ALEXANDRA CARMICHAEL is is not to be confused with "Alex", the Harry Potter blogger I mentioned yesterday. The reason you might get confused (besides the similar names) is that "Alex" has a new ENDO PROJECT of her own... as of now!

Alex has just started writing an endometriosis blog:



Alex said that my post yesterday "spurred her" to get working on an endo blog she has been thinking of doing for awhile. She must have worked quickly because just hours after my post, she posted in the comment field on my endo blog (see yesterday's 7/19/2008 post) to announce her new endo blog! It's hard to believe she just whipped it up because it looks so good! (I'm thinking maybe she had it started and she then finished setting it up on 7/19)???

She already has a detailed, thorough, well-written story about her "endo history". She also already has links to several endo organizations and associations. She is moving right along!

So if you get confused as to who is who, here is a quick summary...

Today's endo news:

Alex is the author of the endo blog called: "The In's & Out's Of Endo": THOUGHTS ON LIVING, LAUGHING, AND LOVING THROUGH THE PAIN AND STRUGGLES OF ENDOMETRIOSIS". To link to her blog, just click on the hyperlink at the bottom of my blog in the "Some of My Frequently Visited Sites" section.

July 15TH's endo news:

ALEXANDRA CARMICHAEL is the Co-Founder of CureTogther (www.CureTogether.com), an organization which is doing research on migraines, endometriosis, and vulvodynia. CureTogether launched their organization on July 15TH.

It's a good thing they don't have the exact same name or things could really get confusing. :)

So, anyway, THIS post is to welcome Alex as a new endo blogger and author of:


Congratulations on your new blog, Alex! It looks fantastic! I posted a lengthy response to Alex's first post. Others (maybe you!) may wish to read my comment on her new endo blog.


Got all that?? :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Blog: HOPE Really Matters For Healing, Coping, & Managing Chronic Illness!

While reading through the excellent endo blog listed below (an awesome find!), I found yet another treasure! First see the endo blog that I first viewed:


The above link is to a superb blog by a courageuous woman who has endometriosis. It's fascinating reading.

On her blog, I noticed a comment from another endo patient named Alex. Alex's comment on the endo blog included a link to her Harry Potter-inspired blog (see below). Since I LOVE Harry Potter (reading those books got me through a surgery recovery so nicely!!), I had to check out her blog:


Anyone who has browsed through the "My Shelfari" virtual bookcase on my blog has seen that I have included the entire boxed set of Harry Potter there. Someday I'd love to afford the real set rather than the virtual one. Anyway, my local library has all of them so I can re-read them whenever I want. (I normally NEVER re-read a book but we're talking Harry Potter here)! Anyway, Alex has endometriosis too. So that got my attention and I skimmed through her blog next. I noticed a widget/tool that said simply:

The Foundation For A Better Life (or FBL for short).

So I clicked on it (the same red button that is now installed on this blog too)!! It's very cool! The red color grabbed my attention so I clicked on it on Alex's site and found a very cool website:

The Foundation For A Better Life (FBL)

Per the website above, The Foundation For A Better Life describes itself as follows:

"We are a non-profit organization dedicated to sharing the values that make a difference in our communities. We create public service campaigns that model the benefits of a life lived by positive values. In turn, we hope to inspire people to make values a part of their own lives, and then to communicate the benefits to others."

This site quotes Mother Teresa, features Gandhi and Einstein... and so much more! I highly recommend it and have installed the Foundation For A Better Life's red button widget/tool on my blog (just check near my traffic map and you should see it). Anyway, if you click the red button it will take you to their great site and you can check it out for yourself!!!

On the site, I found a video clip intended to be a TV spot for a public service announcement. It is about HOPE. I can't seem to get the video to post directly here. So you can view it by simply clicking on the link below:


This message of HOPE may (hopefully) give a bit of help to those having a day with pain flaring up, a day of exhaustion, or a day of utter frustration. I hope this "HOPE" video clip gives you some HOPE that you WILL get through your challenges and be stronger for it!

I hope you find this organization --- The Foundation For A Better Life (FBL) -- as intriguing as I did. Their site is really cool and loaded with things you may enjoy!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog Announcement: New Feature On This Blog --- Infertility/Pregnancy Loss News Source Available In Right Sidebar!

I am pleased to announce a new feature available on this blog! This feature will serve as a means of connecting you with a superb blog (including a blogroll within) that you may find extremely helpful.

Many women with endometriosis are affected by infertility and miscarriages. I came across the outstanding resource I'm getting to in a moment on Pamela Jeanne's infertility blog:


I thought this feature would be a fantastic addition to this blog --- that serves so many women experiencing infertility. (Several of my local endometriosis support group members have had at least one miscarriage as well).

If you are interested in accessing this new feature: "Lost and Found: News Source for the Infertility/Pregnancy Loss Blogosphere", simply scroll down the right sidebar of this blog until you reach the gray (vertical and rectangular) "Lost & Found" logo.

Once you see the gray "Lost & Found" logo, just CLICK ON THE LOGO ITSELF to get to a WONDERFUL blogroll of sites on these same topics and more! When the site it then connects you to appears on your screen it will say, Lost and Found and Connections Abound. "In the end the love you take is equal to the love you make".

This blog (Lost and Found and Connections Abound) may well be the most comprehensive source of blogs on --- infertility; miscarriage; adoption; "family building when single"; "gay and lesbian"; general helpful sites and support;"in the news", "IUI and IVF"; "Living Child-free After Infertility or Loss"; Pamela Jeanne's awesome blog http://www.coming2terms.com/ (which has been listed in my favorites for some time now); etc. and more! It's the most complete list of info that I have EVER SEEN on these topics. It's really astounding!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis & Chronic Illness/Pain: YouTube Video Has Touched Many!!!

Just a quick update for endo blog readers! Two threads have been very active with comments...

(1) The YouTube thread: "Monday, June 9, 2008 YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain..."

(2) The followup YouTube thread: Monday, July 14, 2008 Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

If you have not viewed the chronic illness YouTube video referenced in these 2 previous posts (6/9/2008 and 7/14/2008), I highly recommend the video! If you read the 2 previous posts mentioned above, you'll see the video and the conversation about it.

It is emotional, touching, and ultimately uplifting. I can't say enough about it. I believe ANY chronically ill patient would just love it AND it's an educational tool for helping healthy people to begin to comprehend chronic illness (not just endometriosis but any chronic illness). It's very special!

By the way, the video clip is called: "Don't Judge- the saga of chronic pain" and was posted on YouTube by "booknhorsefreak" (a/k/a caiquecrazy, the screen name she used here on the endo blog). It's AWESOME!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Poll Is Still Gathering Data!

I'm very happy to see our poll "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)" is still getting responses!!

Please keep that feedback coming so we can make this site most useful/helpful! :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Inspirational Endometriosis Blog I Found Today!!!


I found an amazing (!!) endo blog today!

It's SO outstanding that it inspired me to post about it here AND include it in my list of favorite sites (just see the very bottom of my blog's homepage to view my favorites).

Her site is full of amazing content, includes humor, is emotional/honest, and is just a wonderful blog I feel compelled to share:


Please check it out! I'm sure you'll enjoy it as much as I do. It's really special!

Have a fantastic day!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Tips For Endometriosis Blog Readers Wishing to Post Comments!

Hello everyone! I have had a couple of blog readers who wished to post comments but are not yet accustomed to blog "comment-posting". So I decided to post some tips to assist anyone interested in posting comments here on the endo blog. I welcome your comments!!!

Here are step-by-step tips for posting comments to my blog. I have listed the instructions (see below) to hopefully make it easier for you to post comments on my blog (which would totally make my day)!!!

If you aren’t familiar with posting on a BlogSpot blog (like mine), it’s easy… See below:

1) Go to the bottom (underneath) of any of my posts/articles you wish to comment on.

2) Click where is says ___ comments. (The ___ field represents the x number of comments already posted there, if any).

3) A window will appear!

4) In the window given, simply type your comment to me/to the endo blog readers/to the Internet/to the world…



5) Type in your first name if you choose (just a first name, please leave out the last name for privacy reasons!)

6) If you prefer, use a screen name. For example, you could call yourself “Jane” or “John” or any name you like that isn’t in use already.

7) Alternatively, you could bypass the name fields and click on “anonymous”, if you wish.

8) Then, just click “preview” to review your comments before publishing them.

9) When satisfied with your comments, click on “publish”!!!

10) Your comment will then enter moderation. That means it will go to my personal email account.

11) When I see it and have time to respond, I will either “publish” or “reject” it. (I can actually respond FASTER to comments posted on my blog than to direct emails, in general)!

12) The only reason I’d “reject” it is if it had profanity (which I know it wouldn’t from you all!!!) OR if it was advertising something (something I can’t do).

13) Please see my post from June 29, 2008 (in my “June 2008 archives”) called “Endometriosis Blog: Ground Rules for Comments, Google, and AdSense PLUS My Anticipated Response Time for Comments” for clarification on what counts as advertising and what the “rules” are for my comment fields on the endo blog.

I hope this info helps those of you who are new to blog posting. It’s easier than the list above looks. I just made it detailed on purpose to try to help make it easier.

This article was posted by Jeanne via "Jeanne's Endo Blog" at http://www.endendoat.blogspot.com.


UPDATE: What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer). A Follow-up!

The Poll called "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)." is still located in the right sidebar. I just added a week to allow more readers to participate in the poll. Please scroll down in the pink (right) sidebar and cast your vote!

This feedback will help shape content of future articles to be posted right here on the endo blog.

THANK YOU in advance for partipating, if you have not already done so.

It's quick, easy, and will help me pick article topics from here on out!


This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Body Image, The Media, & My Guest Blog Articles On WWW.SOSIOUXME.COM

Please visit Tracee Sioux's blogs on empowering women and girls.

Specifically, I was Guest Blogger on her Blog Fabulous blog:


... and on her www.SoSiouxMe.com blog.

There are visual images in the link below of what I do NOT agree with (i.e. the Abercrombie & Fitch ad photos Tracee included in my post) that may be bothersome, disturbing, or just plain annoying. If you are a parent or caregiver, you may wish to open the following link when impressionable children are ***NOT*** within eyesight of the computer screen.

The following link is actually obout my objection to such ads. In order to understand what it is I'm objecting to, I think these ads (or ones like them) are necessary for the point of my Guest Blogging article to fully come across...

I apologize in advance (!!!) for the Abercrombie & Fitch advertising examples posted here but I think they are necessary to prove a point.

PLUS images like this ARE in the mass media (not to mention your local A&F mall store posters!) where impressionable eyes CAN see them!

These ads (included in the link below) really bothered me!!!


Thank you in advance for checking out the TWO Guest Blog articles I just mentioned.

Tracee Sioux's blogs educate the public about damaging ads like this and how they affect children and adults. Tracee does much to empower women and girls. She is on a trip to the BlogHer conference as we speak... to talk on behalf of empowering women and girls!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!

Meet Alexandra Carmichael! She is the Co-Founder of CureTogether. It is a medical research organization you will learn about in this post! I met Alexandra myself (via an email initially and then by phone) just a few short days ago! I have some VERY EXCITING news to announce. It's about CureTogether's official launch today!! Today (July 15, 2008) marks the launch of a NEW medical research organization!
This organization, CureTogether, has chosen 3 conditions on which to focus their research initially:
You heard me right! CureTogether has picked 3 illnesses to research initially and every single one of them affects multiple women in my local endometriosis support group!!!

Who knows how many endometriosis patients worldwide ALSO are affected by vulvodynia and/or migraines??? I know of one local support group member who has all three of the above!! This launch of a new medical research organization with such fantastic priorities is fabulous and exciting news!!!

Their website (also launching today!) is:


You could be one of the very first visitors to their website simply by clicking the link above. If you do visit their site, I'm sure you'll be as thrilled as I was when I first laid eyes on it!!!

These conditions directly affect so many women (and men too, of course, in the case of migraines). These conditions also affect the families, friends, and sometimes even employers of the patients who are directly impacted by ENDOMETRIOSIS, VULVODYNIA, and MIGRAINES. These are serious conditions for the patients who have them. This is a massive milestone: a medical research organization that is specifically targeting illnesses they view as underfunded and in need of research... like endometriosis!

This past weekend, I had the pleasure of talking with Alexandra Carmichael by phone (see her photo above this post). She and I talked about her organization, CureTogether. Alexandra Carmichael and her husband, Daniel Reda, have Co-Founded this medical research organization. If you view the "Our Team" section of their new www.CureTogether.com website, you can read their bio information. You will also be able to read about Clarence Chandran, Advisor and Chairman of Chandran Family Foundation Inc. AND about Dr. Ursula Wesselmann. She is Professor of Anesthesiology and Neurology in the Department of Anesthesiology/Division of Pain Management at the University of Alabama at Birmingham. She is also a Scientific Advisor for CureTogether (www.CureTogether.com).

This organization, CureTogether, is just launching today and it already boasts a talented group of individuals who care deeply about helping endometriosis, vulvodynia, and migraine patients!! It was all I could do to wait from this past weekend until today to post this article because I am so excited! I was thrilled after viewing the site. I was psyched after Alexandra Carmichael emailed me to announce her organization's launch on July 15, 2008. Finally, I am absolutely ecstatic after speaking with Alexandra by phone this past weekend. Her passion for this research is outstanding and I cannot wait to see what this organization accomplishes. It will surely be a great deal, based on what I have learned in just the past few days.

It is with great honor that I previewed the www.CureTogether.com website just a few days early. It was exciting to see what the site already had before the organization had even launched. I can't imagine the heights this organization will reach after speaking with Alexandra Carmichael, viewing the site, and exchanging numerous emails with her this past week.

It is an HONOR to announce CureTogether to the world from my humble little "endo blog".

PLEASE take a moment to look at CureTogether's great website and see what all the buzz is about! I sure am glad Alexandra Carmichael stumbled upon my "Jeanne's Endo Blog" a few days ago and emailed me about CureTogether's launch! I would like to thank her for informing me about CureTogether!
I welcome any comments from my readers here on my endo blog (just click comments at the end of this article to post your comments/feedback). Also, I think you can comment on CureTogether's website directly with feedback. (I believe it will also accept your comments online because their site took my comments the other day pre-launch). I'm hoping my local endometriosis support group members will give CureTogether a warm welcome too!
Please post your feedback both here AND at their site if you can.
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

***PART ONE WAS ON JUNE 9, 2008***

### The video clip posted on June 9, 2008 on this blog can be viewed easily by clicking the title of this post. That will route you to YouTube. This is an AMAZING video on chronic illness!!!


Please view the comments listed under the June 9, 2008 post:

Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

The woman behind the hauntingly beautiful video clip that cycles through and displays on this blog daily posted a comment today. The clip is about chronic illness. I'm sure just about anyone reading this blog will find her clip amazing!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

My Guest Blogging Gig On "Endometriosis & Body Image" at www.blogfabulous.com for Tracee Sioux

I'll include the link to view the article I wrote as Guest Blogger for Tracee Sioux's blog in a moment but FIRST here is the link to her general BlogFabulous blog itself:

http://www.blogfabulous.com blog

It's a blog devoted to empowering women and girls!

Tracee is speaking at the BlogHer conference in San Francisco and I'm honored to be featured as a Guest Blogger while she is away!!

NOW, my particular article... It was dubbed by Tracee Sioux: "Endo & Body Image, Jeanne".

To read my "Endo & Body Image, Jeanne" article...

Just click below:


The article I wrote (see above link) speaks to an issue that affects just about every endometriosis patient I have ever encountered.

In fact, I daresay it affects most chronically ill people in general!

Chronic illness in just about any form can have profound psychological effects.

I have found psychotherapy extremely helpful (the paid kind from a licensed therapist and the free kind my wonderful friends and family provide so generously)!!

I don't mean to diminish the value of professional therapy in any way!! It has helped me a great deal!!! My therapist is COMPLETELY AMAZING!!!

It's just that my friends and family are great, patient listeners too (with great insights and feedback) and they should get credit for the wonderful support they give me as well.

When I add the support I get from my therapist, family/friends, local endometriosis support group members, and the readers of this very blog... I realize I am very fortunate indeed to have such loving support from so many!!

I do my BEST to reciprocate any way I can AND to show my gratitude!!!

Thank you ALL of you for the amazing support you give me each and every day!

The last couple of months have been a wild ride for me but your support has helped immensely!


This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Jeanne's Endometriosis Blog: My Shelfari Bookshelf, Poll On Topics Of Interest To Readers, FEEDjit Traffic Tools, and More...

Little by little, I have been adding to the tools you see in the sidebar of this blog.

One of the newest updates is called "My Shelfari Bookshelf". If you scroll down the right sidebar, you'll see what looks like a bookcase. The books I have put into this virtual bookcase don't necessarily pertain to endometriosis but I put them there because some endo blog readers may enjoy reading them as I did. Some of them were already "book reviewed" in previous posts on this blog (or were mentioned on the blog). Others are simply books you might like.

Those of you who have been following this blog for awhile have most likely noticed the FEEDjit "traffic map" tools I have used. I am consistently amazed this blog has gotten visits from all over the world. Here are just a few examples of places where this blog's traffic has originated: Serbia, Canada, South Africa, Australia, The UK, Mexico, The U.S., The Philippines, Singapore, and Malaysia just to name a few. I am amazed at how varied the traffic has been in less than 1 & 1/2 months of writing this blog.

As I mentioned in yesterday's post: "Endometriosis Topics: What Interests YOU??? Let's VOTE Using A SHORT Poll To Show What We Want To Read About Endometriosis!", I would GREATLY appreciate if endo blog readers will take a brief moment to VOTE using the POLL which I created to better understand what topics are the most needed and wanted by our endometriosis and chronic illness blog readers.

Today I accepted an invitation from my blogger friend, Tracee, to join Twitter. I signed up for it today and it's in the blog's sidebar.

Your feedback is very important to me! Please let me know your impressions of the blog so far...

I hope you all have had a great weekend so far. Please check in again soon as I expect some endometriosis news to be posted next week. Stay tuned! :)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Topics: What Interests YOU??? Let's VOTE Using A SHORT Poll To Show What We Want To Read About Endometriosis!

Making Our Endo Blog the Best It Can Be:

I thought this might be a perfect time to ask you and other endo blog readers like you for your input!!

Story ideas/topics can range from one word ones like "infertility" to phrases/questions on loaded topics like "does anyone have tips for dealing with loved ones who just do not understand the limitations that endometriosis puts on me?"

In an effort to determine how to best meet your needs, I have developed a SHORT poll.

Please view the new (and very quick!!) poll. It's in the right (pink) sidebar - after "welcome" and before "archive" sections - of this blog. So cast your votes and have your voice be heard!

I've included the poll to determine which topics interest endo blog readers the most. It allows you to VOTE for one or more of the topics listed. It'll provide feedback for me on YOUR support needs and I'll get to see what my fellow patients are looking for/expecting in an endo blog.

Simply select any (or all) options you find applicable; then just click on "vote" to view the results of the voting by you and other endo blog readers thus far!

I think the best way to make this blog successful and thriving is to elicit input from endo blog readers like you! Who better to ask for input than YOU???

You may know exactly what information/support you're searching for or in need of...

Or maybe you are overwhelmed and NOT sure what to look for...

Either way, I'm sure you can help me focus in on the issues that will be most meaningful and useful for you and your circumstances.

I could honestly write blog posts all day, every day --- but it wouldn't be very productive or useful if no one reads them or finds them helpful! THIS POLL is a chance for YOU to provide input that will help me focus in on the topics that matter to YOU the most!

Please take just a moment (I just checked it's 9 quick clicks OR LESS!) to do the endo blog readers' poll. Just select the topic(s) most interesting to you.

Also, IF you fall into strictly the "other" category listed last, please feel free to email me directly with any endo ideas(s) that I did not list --- but that you would like to see featured. In that case, just email to this address: endendo@frontiernet.net.

If you email ideas directly, PLEASE fill in the email's subject line with "endo blog ideas" (or something similar) --- so your wonderful emails won't get lost amongst a bunch of spam... and I'll be able to use your input & ideas to create new posts for the endo blog. I can't guarantee I'll cover each idea submitted immediately but I will most likely take bits and pieces from endo-related idea emails I get and somehow interweave them into a narrative.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


ENDO SURVIVOR! Our Very First Guest Blogger With A Message Of Hope and Determination - Elaine's "Endo Story"!!!

Editor's Note: Elaine refers several times in her article to BCPs. This is short for the birth control pills that she took to treat her endometriosis. As always, PLEASE refer to the disclaimer at the top of this endo blog's homepage. This blog does NOT dispense medical advice. This is one woman's story of her endo journey. Elaine is a former (volunteer) endometriosis support group leader.

Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:

"Endo Story": I Am An Endo Survivor by Elaine

I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.

I am an endo survivor.

I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.

Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.

I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.

Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.

Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.

When I entered college and got my first job, missing days became more of a challenge.

I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.

Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).

I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.

During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.

Well, I guess two good things came from having the surgery:

One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.

And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.

I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.

A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.

I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.

It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.

Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.

I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.

In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.

This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.

Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).

I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.

I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?

I just know that for the first time in my life I feel good.

My wish is for all women with endometriosis to reach this point.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).


Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

*** Please read the disclaimer at the top of this blog. ***

As many of you know, interstitial cystitis is one of the illnesses often found in women who have endometriosis. Interstitial cystitis affects both men and women but there have been research studies showing a higher incidence of IC in endometriosis patients than in non-endometriosis patients.

Wow! I found a great interstitial cystitis video clip (on http://youtube.com/watch?v=myjd4UMtCfw) and I decided to include it here. It was posted on YouTube by “YourUpdate” on June 21, 2007.

Here is the description of the clip from www.YouTube.com: The Interstitial Cystitis Association (ICA) educates both patients and healthcare providers to better understand and treat people with IC. Contact The International Cystitis Association (ICA) at for info at: http://www.ichelp.org/

Another source of information on IC is the National Institute of Diabetes and Digestive Disorders and Kidney Diseases (NIDDK):

See their website at:


I had had interstitial cystitis for 12 years before finally finding a doctor who properly diagnosed me. My 4th cystoscopy (with hydrodistention) was performed while I was under anesthesia for one of my laparoscopies for endo.

The cystoscopy was done at that time because I still presented with classic IC symptoms despite 3 previous negative cystoscopies prior to my diagnosis by a different doctor. (Ironically my first 3 cystoscopies were done by 2 different urologists and my proper diagnosis was finally made by a pelvic pain specialist).

Anyway, I have a regimen that I follow and it does help. I believe I had IC for the 12 years leading up to my official diagnosis. Whether the appearance of the inside of my bladder lining changed much in those 12 years or whether my pelvic pain specialist was better at properly diagnosing IC than the urologists had been, I may never know. All I know is my IC has responded to IC treatment.

It is crucial to advocate for yourself. Like the interstitial cystitis patient in the video clip, I believe it is crucial for IC patients to “take an active role” AND to “get the correct diagnosis from your doctors”. IC is often misdiagnosed.

HINT: If you do get diagnosed with IC and your doctor prescribes medications to be instilled into the bladder, the pediatric size catheters are a 'must' in my opinion. So if you suspect you have IC and you DO end up getting diagnosed with it, just keep that in the back of your mind. My doctor automatically ordered the pediatric size for me but not all doctors may think to do this.

That reminds me… for anyone who is unaware of this, you can request a smaller sized speculum for Pap smears. Just ask your GYN and you may find pelvic exams are less painful!

Last but NOT LEAST: I found this amazing blog today on chronic illnesses. Actually I found this blog a couple of weeks ago & subscribed to it then --- BUT the IC stuff just jumped out at me today's mailing. There are just TONS of IC links near the bottom part of the (emailed via my subscription) link listed below.


If you even think you might have IC, these links (the last link above) are worthwhile reading (I think) from what I saw when I skimmed through them. (I simply didn’t have time to read through them ALL but there are just LOADS of them)!

Follow your gut and find the medical care you deserve. After all, we ALL deserve a decent quality of life.

Let's skip past "striving to get well" and skip right to "thriving" if at all possible.

Be well!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Gratitude Moment --- Crisis Averted: Test Came Back Normal On the Second Try!

Some of you are aware that I had an abnormal test recently that looks for a rare cancer called a pheochromocytoma. Due to the numbers coming up high, I had to do a second test and was nervous, to say the least.

I have had several "cancer scares" over the years and I had a "surprise" carcinoid tumor removed in 1996 during my (planned) combined surgery to remove endo and a foot of my colon. (Back then I had a hemicolectomy, entire appendix with the carcinoid tumor removed, endo removed... the works... during a laparotomy. I have also had 6 laparoscopies). If I had had a pheo, the surgery used to remove it is either a laparoscopy or laparotomy. I personally have no desire for an 8th abdominal surgery!

I was supposed to get the results of my 2ND 24-hour urine test last Thursday but they weren't ready then. This just increased my anxiety over it. I just spoke with the nurse at my primary care physician's office and the 2ND test was normal. Yay! I'm so relieved!

A pheochromocytoma is a tumor on the adrenal glands (which sit on the kidneys). So the PCP thinks the reason behind my first (abnormally high) test was the extraordinary level of stress I have been under. After all, my adrenaline has been getting a workout lately.

Thank you to everyone who sent me positive energy, prayed, listened, etc.!! Your support and kind words have helped me more than you know.

I have yet another reason to be grateful today! :)

P.S. THANK YOU to all who emailed me with their support! I really appreciate it!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: Let's Hear From One of Our Readers

Hi all!

OK. So, as many of you are already aware, Alicia is far more than a random reader of my blog (not that there is anything wrong with being a random reader of my blog)!!!! :)

Alicia is also a friend of mine. Anyway, she has her own blog and posts comments on this blog regularly (and vice versa).

Today her post was about "Endometriosis and Infertility". I am including her link here in this post:


While Alicia's blog link is conveniently listed on the very bottom of my homepage all the time, along with some other links that may interest you... I thought I'd "plug it" here too. Alicia has been through a great deal during her "endo journey". Granted, so many of us have had challenging "endo journeys" of our own.

The thing is that this is why we can relate to one another so well. When I get connected with a fellow endo patient, it often leads to a strong bond because we automatically have so much in common going in.

So please check out Alicia's July 6, 2008 blog post on endo & infertility.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endo Blog: Infertility Resource Provided by Alicia... Tertia Albertyn's Blog About "Infertiles"

Today's post is easy because the info jumped right out at me. Alicia, an endo and infertility patient who posts comments often on this blog and is a wonderful friend, told me about a blog I'd never seen before... about one woman's struggle with infertility.

The following blog (see her blog link below) is written by a woman named Tertia Albertyn, who lives in Cape Town, South Africa and calls herself "an infertile". This is one very persistent and determined woman! After reading her most recent post and her bio, I realized she has had 10 IVF procedures done!

Before I get to the link to her blog, I should forewarn you there is some swearing in her most recent post: "How to be Good Friends with an Infertile".

So I wanted to give you a "heads up" since I made a point of asking for no profanity on my comment boards (see my June 29, 2008 post "Endometriosis Blog: Ground Rules for Comments, Google, and AdSense PLUS My Anticipated Response Time for Comments").

While I don't use profanity in my posts, I won't shy away from sharing Tertia Albertyn's blog with you... since I believe many of our readers will take comfort in Tertia's words regarding her struggle with infertility.

Here is the link to the "So Close" blog, written by Tertia Loebenberg Albertyn.


Whether you are experiencing infertility caused by endometriosis or other factors OR just trying to support an infertile friend or loved one, I think you'll find this blog interesting!

Infertility can be a devastating, isolating, and heartbreaking journey.

Sense of humor can be crucial when dealing with such a dark emotional subject as infertility. This blog (check out the bio) provides a wickedly good sense of humor, insight, and wit to a very real and painful condition that affects so many!

Tertia Albertyn's link was published with permission from Tertia Loebenberg Albertyn.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: Holidays Can Be A Bit Challenging

As we head into a holiday weekend for those of us in the U.S., many are thinking of summer fun: barbeque cookouts, picnics, pool time, visiting with relatives, traveling, etc.

Holidays can also be an emotionally challenging, if not painful, time for chronically ill patients. Sometimes friends and relatives can have expectations of their chronically ill loved ones that are not realistic.

A chronically ill patient/chronic pain patient (endometriosis induced or otherwise) often cannot "keep up" with healthy peers on everything expected of them.

This can cause hard feelings, misunderstandings, tension, and isolation.

Some chronically ill patients push themselves HARD to "keep up" with "everyone else". Others lie low and avoid holiday visits because they find them too draining. Others are somewhere in the middle.

Self-care is very important! LISTEN to your body. If your body gives you signs and symptoms that it's hurting or tired, perhaps you may wish to modify your plans to fit your body's capabilities. Be flexible. The world will not come to an end if you don't "make everyone happy". In fact, making "everyone" happy is quite impossible. You can't please everyone.

Be true to yourself. Know your limits. Know when to quit. What fun is overdoing over the holidays and then paying for it for weeks (or more) afterwards?

Learning how to pace yourself can be a challenge. Gain support for yourself from other patients with the same or related illnesses. This can be from face-to-face support groups, emails exchanged, phone calls, instant messaging/chat rooms, message boards, blogs like this, etc. Suffering in silence isn't healthy. If you reach out to find even one person who "gets it", it will be well worth the time/energy invested.

For those of you who are about to celebrate the holiday weekend in the U.S., try to implement strategies that encourage self-care. For those elsewhere around the world (and I notice from my live traffic map that this number is growing!), it doesn't take a holiday to cause people to display unrealistic expectations of chronically ill patients. Assert yourself when needed. Being polite but firm & honest about your limitations can make things easier (or harder) in the short run, depending on with whom you are interacting. Doing this almost always works out better in the long run, though.

Don't be afraid to say "no thank you... I can't make it" if an activity is beyond your limits. You can't please everyone.

Please have a happy and safe holiday weekend and find something (just about anything) that brings you joy and do it/use it). Don't feel guilty if you worry people will "judge you".

For those who are traveling, try not to overdo things and travel safely this holiday weekend.

Self-care is so crucial to managing chronic illneses.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endo Blog: This Post May Be It For Right Now, I'm Afraid... But I'll Post Again As Soon As I Possibly Can! :)

Hi all,

I have had a very busy morning posting replies to comments to previous posts. Yes, I am talking in circles! I think I am all "caught up now" on responding to Deirdre's GREAT comments. I'm pretty sure I'm also caught up with Alicia (aka Yaya). I had replied to others' comments as soon as I saw them in my inbox.

Soooo... I think I'm finally totally caught up with replying to all previously posted comments! So bring it on! :) The more comments the better!!


While my illnesses do slow me down & may also keep me from replying individually to each comment, I believe I am now "caught up" on replies to reader comments. Please tell me if I am mistaken!

I need to at least take a break from posting and replying... if not call it a day for today. I'll post again when my energy allows me to. I need to pace myself. I am exhausted!!!

In the meantime, please check the archives for over a month of endo posts & comments back to them!

Have a fantastic day!!!


P.S. For those who have asked me for more details, I expect to hear more tomorrow afternoon about the lab results I am awaiting. (If I just post this here now, I can say it once rather than send numerous emails or have to create an email distribution list). Thank you for keeping me in your thoughts!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


Endometriosis Blog: ONE MONTH ANNIVERSARY!!!

I sincerely hope to make a meatier post later today but for now...

Let's celebrate one month of this blog's existence by reading the latest updates to the lengthy and informative post: "Deirdre's Brilliant Comment Has Resulted (Unknowingly) Into a Full-Blown Endometriosis Post!" It was posted on June 28th. It was inspired by a comment by "Deirdre" on another post. To view new comments, simply click on "comments" underneath the "Deirdre post".

I hope to post more tonight if my energy level and pain level will allow me to do so.

Please check back regularly and often. I will make every effort to update/maintain this blog to the best of my ability.

One last note: we now have a full month of archives to read if you are interested. Just go to the June archives to see over a dozen articles!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

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